Category: Blog

In 2009 Donna was diagnosed with stage IV cancer and given six months to live. Since then I have been playing hide and seek with life’s meaning and purpose, out of control self-loathing, and the ideation specter. Just writing this evokes a paralysis because I have no answers, no understanding, no sense of finding meaning and purpose for me let alone facing it and writing about it.

I’ve worked since I was 16. While in high school and college it was part time. After graduating college full time. My work was me. I was my work. Simple as that. Of course I fell in love, got married, went on vacations, and did stuff other than work. But my self attributed feeling of success was, as is the case with most boomers, tied to work and income. Which reminds me of a quote from the film “War of the Roses”. Danny DeVito says “My father used to say there are four things that tell the world who a man is: his house, his car, his wife and his shoes.” Those four things are surrogate markers for meaning and purpose. (i.e. career/money).

In 2009 when Donna was diagnosed I moth balled my business which meant I gave up my lease, let employees go, sold off/gave away all my equipment/computers/office supplies, and stored the rest. It took weeks and weeks. During that time I found a space to rent a desk and began to look for ‘consulting’ work. A friend working at a pharma company had a part time slot which I took. It was not my own office and not my employees but it gave me time and flexibility to take Donna to all her appointments, chemo, scans, and care for her.

When I mothballed my business I replaced the meaning and purpose of work with caregiving. I’m a caregiver by nature and being that for Donna was a joy riveted to fear. The meaning and purpose pulled from caregiving is largely invisible because it is masked by grief scented love. August 2011 Donna died.

When her funeral became a memory and all the necessary death of a spouse paperwork completed any and all meaning and purpose I had evaporated. My consulting gig ended late that year. Here I was standing in a dark, musky, and, abandoned warehouse of memories. A single 25 watt bulb cast an infinitesimally small and unrecognizable shadow of my life onto the floor around my feet. The rest was dark.

Fumbling In Darkness

In my defense I did not fold up and die. I admit I beat a measured retreat into my world. I would posit that cleaning, organizing, arranging, etc. were all to honor Donna and what we build. True to a point. Most of it was a case of OCD and the need to keep moving and doing something even if it was lining up paper clips.

I spend time looking for work in my field, pitching ideas in the Venn of technology, grief, and end-of-life. None of it panned out due to half heartedness and being of a certain age with no creditability. In that darkened warehouse with the shit light of a cheap ass bulb I stumbled around finding what the emptiness held. Yes empty does contain things. I wrote and read a lot on grief and terminal illness and end-of-life. I had a near death experience and a month in rehab. I deliberately pushed the 25 watt bulb so light would swing out in an arc illuminating corners. I began to find more things in the emptiness like the need/desire to write about Donna and our life her life my life. Right now the book is finished nearly laid out and soon to move into self publishing. I began to see there is and are people to hang with and do things though I will readily admit I have the attention span of a gnat and get bored easily. I get bored easily all the time. Which drives some manic behavior. I can’t help but think they really really find me boring as well.

The Specter of Ideation

We all have an expiration date. Either we coexist with it in peaceful diplomacy, fight it tooth and nail or surrender to dark. Once meaning and purpose becomes a distant sunset the partnership with grief envelops you managing the expiration date expectations. It becomes, at times, daunting on an order of magnitude.

My ideation ebbs and flows. It is proportional to my boredom, lack of meaning and purpose and grief. The grief has a mind of its own and closure is not an option because to do so denies Donna’s existence. I will not do that to her and to me. If I can keep the boredom at bay perhaps I can find some meaning and purpose

Volunteering As a Path to Meaning & Purpose

Not sure when I started to consider volunteering. It was not easy to consider volunteering as a life choice. Nothing says retired, old, unless, and without meaning and purpose as does “I am volunteering at…” Don’t get my message wrong. I am not besmirching volunteering. Without people doing it much of the greatness human offer other humans evaporates. It is more about me being unaccepting of me as I am.

I began to think that if ‘lean in’ to my being unaccepting of me as I am and my self identified lack of status in the larger world of success ever penetrating life’s periphery I can pierce its heart of hopelessness and slay it. Why not try volunteering. Oh fuck.

Last summer I registered to volunteer at the 9|11 Memorial and Museum and a local hospice. Hope springs eternal.

The 9|11 Memorial and Museum is a great place to volunteer. They recognize the importance of volunteers and what they bring to the experience. They are also exceptionally well organized and managed. Though going to the museum has moments of sadness. Donna and I lived a few blocks away from the World Trade Center. We experienced 9|11 first hand and didn’t not escape to the suburbs. We stayed and felt it all. You can read my experiences here, here, and here.

The staff is aware that volunteers need to work at different posts and each scheduled day they post you here and there. The duties are very simple help visitors find locations as well as where the bathrooms are and the exits. Not brain science but ,you meet many people from across the globe. At times you have an extended conversation about 9|11, your personal experiences, and NYC. Meaning and purpose? Meh but, I will take it.

The hospice volunteer work is emotionally difficult though the time I am there it is slow. The unit is small and most patients are sleeping and the few family members who are there during the day are usually fine without volunteer help. This was the unit, on a different floor, where Donna was and where she died. It is on the oncology hematology floor. This was where Donna was admitted for a throacentesis and later moved to the hospice. Here, here, and here are some posts on hospice and Donna. It is what it is and I hope that I help families and patients.

December 2017 my friend Miguel asked me if I could help him. Miguel is PTA President of NYC Art & Design High School. He and another parent Saori created and were getting ready to execute a large event in February. It was a Fanfaire ’Not another comic con’ event. Fanfaire was a two day faire that included educational panels, D&D play, cosplay, and booths of artist/students selling their work. I said yes with reservations because of a lack of knowledge of comic books, artists, gaming, and having no kids ever. Not that I was totally devoid of knowledge and was just over my head. Miguel assured me that my role would be to simply help the 10 or so panels get situated and running during the event.

I jumped in to get familiar with the event. The panels were amazing. Topics ranged from comic book creation, to Riverdale the TV series, to Niche Marketing, the comic book process, portfolio reviews, and more. The panelist were luminaries from the world of comic books, animation, costume design, technology and more. Many of the panel moderators were going to be students at Art & Design. I still felt over my head. Yet my marketing and advertising life kicked in and I started to take a bigger role.

Miguel told me that the real driving force behind Fanfaire was Saori (the other parent) who is the daughter-in-law of Neal Adams of DC Comic Book fame which included Batman, Green Arrow, Superman, and many more. Damn I really was over my head here. Saori is a force of nature who’s focus rivaled Donna’s in many regards. And Miguel, well he is work horse who can juggle many many balls and does not miss a fucking thing. Least we forget Frieda, Miguel’s wife, who’s graphic design made Fanfaire shine.

Green Arrow from Neal Adams Studio

I soldiered on. WTF is the worse I could do? Misspell Neal Adams name, which I did – Neil. (An aside: I went up to Neal Adam’s studio to grab some flyers. Saori introduced me to Neal I shook his hand. My 30 something comic book, video gaming friends were all jelly. As if someone with one foot in the grave has anything a 30 something envies. I will take it.)

Saori, Miguel, and his wife Frieda created a media kit as well as the web site, materials, badges, signage, and more. I was asked to hit up various comic book stores and tech companies to pitch sponsorship. I went to Apple and Microsoft who turned around and became participants. Walked to a bunch of comic book stores in NYC peppered them with flyers. A PR genius friend shared email addresses for local media in NYC. I pitched those media outlets with the material Saori, Frieda, and Miguel created. The day before the event the NY Times ran a piece on Fanfaire in What to Do In NYC.

The two day event took place Feb 24 & 25. On Friday I went to help to set up the gym and the cafeteria for all the tables that were sold to students and other who sold their art. The next day was day one. My role was managing the panels in the auditorium and another room. Making sure panelist were there, sound set up, and slides ready to go.

There was significant more I did which is just stuff. The truth be told, working with these high schooler’s was something new. Walking around with one early in the week to hand flyers out to local hotels, the A/V nerd setting up the panels, the kids who manned the elevator to gave visitors directions. Then there were all the students who bought tables to sell their art. A littered landscape of teens teeming with excitement and some ‘I have to do what?’ They did it whatever it was.

I am old and invisible to this demographic. It doesn’t matter. What mattered was watching them participated and attend this event. Though I hold the opinion children should be sautéed and not heard I was so struck by their enthusiasm and engagement with everyone. I couldn’t find an entitled asshole among them and I scanned for that. Their reaction to this opportunity and what it meant was amazing to witness and be part of. This was Christmas to a group of non-private school, non-entitled kids who had joy written on pimply faces, multi colored hair, and outfits as bright as Joseph’s coat of many colors. I was so struck and grateful to have helped in some small way.

Meaning and purpose comes in shapes and sizes. In some cases it is driven by what one projects to others based on the coin of the realm, ‘Look at my power, my wealth, my car, my employees, my clients, etc. etc. on to infinitum. That is fine and it is all well and good. I lived it and was it. That meaning and purpose then was as good as any and it was not gathered at the expense of others. At least I hope so. That was the coin of the realm which I traded in.

Fanfaire felt different from the other endeavors. The meaning and purpose it served up was nothing that I could turn outward. It resides within me. No one really notices because it has no cashe and to boast or project that doesn’t work. Saying, look I lined tables up or walked into Apple and pitched them is a big fucking yawn. Within me was the experience of learning shit I didn’t know – shook Neal’s hand, met costume designers and more. Working with people who were smart as hell, learning new things, etc. is meaning and purpose. Being a day laborer does not communicate meaning and purpose. To find meaning and purpose you sometimes need to labor invisibly.

Make no mistake about it high school students are just what you think ‘That was fun, next.’ I saw these students being just that, students who were thriving because what Saori, Miguel, and Frieda created from whole cloth. For a nanosecond I put aside my living with no meaning and purpose flicked my ideation off the table and found a little something to bask in albeit for me internally.

Don’t worry I will impale myself back onto the entire self loathing and crashing against the emotional shoals of my life, my grief, and my forever seeking a place to reside. For now I carry this small Fanfaire moment as a talisman telling me meaning and purpose abounds, if we look.

If I can’t have you I’d just be wasting all my pennies in a wishing well.

Caroline Spence “Wishing Well”

The flu. The damn flu of 2017 was the harbinger of my seclusion and my failure to thrive.

Mid December I got the flu. God Damn petri dish Tribeca children. I know I’m being dramatic. I got the flu somewhere. I’m neurotic as hell about washing my hands pre post subway, gym, and anytime I leave the my apartment so blaming the children of Tribeca is accurate and appropriate. Besides these children have healthcare, education, money, and SUV’s which in turn make them entitled to try and kill me so their parents can buy my loft after my death. Some clear logic here to my failure to thrive.

It was only the flu. Got a Rx for Augmentin, drank tea, stayed in, and hated my life. Just the flu. Knowing the truth of being a guy and how dramatic we can be with our hypochondria I hunkered down and said bye to everyone. I only spoke to myself in the hushed tones of those sitting in the dark under the covers.

‘Mark you’ll be fine.’

‘You know what this it is the flu’

‘What if it was something else? An MI, stroke, or who the fuck knows.’

‘Do I want to face something serious alone? Do I want to burden family and friends with my illness.’

‘I know I cared for Donna without a second thought and would do it again and for others. I am a caregiver. It is in my DNA.

‘I don’t want to be a care receiver.’

Those are my internal ramblings that set in motion my current state of mind.

After the flu, which seems to have no real after, you just stop feeling like an old sock in the gutter yet never really feel refreshed and ready. I didn’t want to see anyone or do anything over Christmas. It felt as if my life was becoming a series ellipsis highlighting my omissions.

This abandonment of the world is not me. I enjoy family and friends for dinner during the holidays. Though it takes a lot of energy but that energy converts to joy. Not this year. It was more pulling my horns in and keeping distance from others. I added to my volunteer schedule to escape the apartment and stayed home when I wasn’t volunteering. I still got presents for friends and family. No Christmas cards were mailed this year, which was a first and something Donna loved doing. Not a great place to be on many levels.

I could feel discomfort in my decision to hide. Not a raw gnawing within me but a pebble in my shoe. A small one that’s not uncomfortable enough to make me stop. unlace my boot, lift it, and drop the pebble on the ground. I would live with the pebble and limp for now. Besides it was bitter cold and the loft heaters needed to have some compressors replaced. The cold was the pebble impeded my thriving. Or not.

I went to volunteer at the hospice. Went to volunteer at the museum. Did my time. Came home and tried to grocery shop so I could cook meals. Gnawing. Gnawing.

Me and My Shadow

I began to see an elongated shadow of death, my death by me for me. This is not new. Self annihilation rides with me. It is my little friend. Always a shadow at noon. Short and barely visible. Just there. Now the shadow was obvious as if cast by the 5pm sun, long and animated. It took every step I took and would not disappear even when the sun set.

I looked about me to find meaning. I saw nothing. I looked in the mirror and saw nothing. There is nothing other than this shadow.

So there I am giving up. Wanting to join Donna if she would have me. I look at the frail and the elderly and see myself. I see the couples walking and holding hands and get wistful. There is no anger toward them just my surrender to what is and will not be again. Just to hold Donna’s hand once more. The flywheel on the stationary bike spins as I do in repetitive circles mimicking Sisyphus in my thoughts.

Feeling vs. Thinking

“The truth of a thing is the feel of it, not the think of it.” Stanley Kubrick

Thoughts are driving my feelings and hindering my thriving.

I think I’m alone I don’t really feel alone.

I think I’m old I don’t feel old.

I think there is nothing for me yet my curiosity drives me.

I think I am angry at everyone else’s happiness I don’t care enough to be angry.

I think I want to kill myself today I don’t feel like it. I am too angry at me.

Volunteering at a local hospice I see the dying. Their sunken faces, loose dentures, gnarled fingers of sleeping skeletons reinforces the discontent in me. That is what I think. What I feel is the need to care and help to share my journey with those who can listen and their families. I don’t want to share my shadow as it exists today. I want to share me, yet that begs the question is me enough for them? Is it enough for me? Should I push my shadow down into me and reside in a shadowless world?

I need to redefine thrive. My failure to thrive is a standard from another place and time. That previous standard is not producing the outcomes I expect because they as Donna liked to say “There is a reason they call it history. It happened then.” Old standards and outcomes are not applicable to me today.

It Happened Then

“Do not let anything that happens in life be important enough that you’re willing to close your heart over it.”

Michael A. Singer

Yes I miss Donna. Yes I hurt over her death. Yes I miss the life I had with her and rue the one I have today. These are the active thoughts coursing through me. If I stop and feel and not think I feel there nothing quite like missing her in the present. Feeling what she brought to me and helped me discover about me makes me want to be who she loved. I feel her not her death.

I take small steps playing small ball. Doing small acts of kindness that help others and hopefully help me. Today these outcomes have the feel of something. I will accept feelings now over nothing. Feelings over think. I have to surrender to feelings and transfer those to designing new outcomes. I have to accept that these lower/lesser/minor outcomes are not what I think they are. They are outcomes of me and what I create daily.

Her death in and of itself was not important. Everything dies. Donna was important. What we had and what we were was important. How she made me feel about me was important. How I cared for her was important. How I loved her was important. I will never close my heart over Donna. I will close my heart to her death. Death doesn’t matter. I will not close my heart to her, us, we, the world, and life. With an open heart I seek small outcomes that I value.

Have you ever read a book (Ready Player One) or saw a film and realized that you’re missing a reality in your life?

I just finished Ready Player One, the 80’s pop culture, video gaming book by Ernest Cline and suddenly my thoughts about video gaming (shared here, here, here, and here) seem naive and misunderstood. Deeper reflection on the book and my first, second, and third response to Ready Player One is summed up by this: “Going outside is highly overrated.” Anorak-s-Almanac.

Background

Let me explain. If you heard this just scroll down. I’m an old/new gamer. Three and a half years ago I started playing console video game(s) never having gamed, like ever. I will add, I am of a certain age (While diving in the Caribbean the instructors described people on cruise ships as, Newlywed, Over Fed, and Nearly Dead). I am in the later group. An age where getting off the sofa after two hours of killing things is an effort not dissimilar to walking after shoveling snow for five hours. It has gotten to the point where right hand securely grasps the cushion of the sofa pushing down to rise as slowly as a sunrise with more grimace and less sunshine. Yes that old. I started playing Destiny when it launched. Only later in that first year did I learn it was a AAA game (i.e. big person game).

Jumping into gaming with a AAA game can only, in the harsh light of 20/20 hindsight, be described as naive enthusiasm bordering on having the training wheels taken off your bike. ‘Yes yes I can do it.’ Only to need a skin graft on your knees and elbows.

Learning to use a controller was an exercise in frustration. All those buttons, bumper, trigger do all of this, shooting, aiming, jumping, running, sliding, dancing, waving, etc. Being the deep thinking I am, I just booted up and played. Played poorly with no baseline of gaming knowledge or skills. Sullen and alone I played partly because I didn’t know how to friend on Playstation and later when I did learn I was embarrassed at my skills. Did I just say skills? That’s a joke yet, I kept at it. Kept being frustrated yet elated when I leveled up, got a drop, or found loot. That is what gaming does or anything for that matter, rewards you enough to keep you interested. Finding the milk hasn’t spoiled in the fridge is reward enough some days. Wouldn’t you agree?

During these three years of Destiny 1 I went to PAX three times. I was embraced by the gaming and Destiny community even though I am an unskilled newbie. “You like me you really like me.” PAX served up a piping hot plate of emotional adrenaline with a well of enthusiasm gravy sitting on the mashed. All of which kept me going and made me a bit delusional about my gaming chops. Those chops would disappear like floater in the bowl once I booted in and saw others play or watched my self play. It’s true white old men can’t jump.

Leave us not forget besides the controller there are other elements to gaming. The story. Game play. Upgrading weapons and armor. WTF is that stuff? Still like the savant on the short bus I kept at it with my eyes on the prize. I’d settle for a simple prize, not having to look where to put my fingers on the controller. S l o w l y I leveled up and increased my light all the while vacillating between I am an idiot to I am okay. When ever I thought I was okay I would raid with friends and a blinding light of insight was illuminated in flashing neon “You’re a moron.”

None of that kept me from preordering Destiny 2 with the explicit mission to learn how to play before I just played. Oh the best laid plans of mice and men. I ended up grinding to get to a light of 20 then did the missions…being widowed/childless and not engaged in the community I can safely say, I live in my own private Idaho and hide my dumbness without being discovered. Though friends will call me out.

Before I get to Ready Player One please note:

Even on my best playing days I am a realist and know others laugh at my play and shit skills though not in a cruel fashion.

I knew the hard core gamers, comic book nerds, film freaks friends had a deep background in this world going back to the 80’s which with an unlimited amount of time I will never learn.

My horizon is no longer expansive. If I wake up in the morning not dead that’s amazing.

All of this makes me question why the frack am I doing this?

Ready Player One

I had two recommendations for Ready Player One. One was @mollywood who is co host of Make Me Smart and Marketplace Tech. She is geeky, nerdy, smart, and cool. The other is a friend an adult has been a D&D Dungeon Master for two decades. He keeps notes on his weekly play with friends and he has an original Tomb of Horrors module. Both Moly and Mark thought RPO was a good read. Good enough for me.

So I begin listening, which I feel is cheating compared to reading, whatever. As I said, no review here. The references in Ready Player One to the 80’s are staggering. They go from D&D, to Rush, to Space Invaders, to Yars’ Revenge, and on and on and on. This link to RPO Allusions to Cultural References will show just how deep the references go. Some I knew, others I didn’t which meant, I stoped listening and looked up the reference. This was kind of the honeymoon moment where all is cool and I am in the zone of ‘oh shit wow’, this fits with this in to this. In my mind a gaming foundation was being laid after I already started living in the house. Surely I jest, a foundation it’s more like a sand castle.

As I listened to RPO I learned things that fit with my current delusional immersion in video console gaming or or said another way, I am rounding out what I was doing with the RPO history of gaming and the pre-esistence of so much more. RPO showed me what the real gamers knew and did while I spent the 80’s working, getting married, starting a business, buying a home, etc. From the vantage point of a widower sans children, skipping the 80’s to do all that means I don’t have to eat cat food today. Those friends who game were spending years building some serious muscle memory of anime, music, games, computers, and in general having the knowledge to pick up a game and know how to play. I am sure they will never eat cat food either. Each one is smart as frack.

I finished RPO and was seriously pumped that I was seeing/learning things I didn’t know. I was going to write an astute post about this and how cool all my new knowledge was.

The Reddit Reality

After having been embarrassed on FB for posting bullshit fake stuff I said to myself “Self read a bit more about RPO.” If you ever get lost in magical thinking just go to Reddit and have your magic adjusted. Reddit comments on RPO comes down to, if you are really cool from the 80’s and know the references RPO is yawn so boring. And those from other age groups where pretty much in the same camp.

“It is pretty tiring. After reading it you can see why it’s recommended so much on here. It’s a good setting with the dystopian world, and the Oasis, but the book is pure nostalgia pandering and it’s quite tiresome. “and then when we were finished doing this cool thing you remember from your childhood we watched that movie you remember from your childhood.” Like ugh.”

“I got all of the references and hated the book. It’s like he’s trying to sell me a bad car covered with cool bumper stickers.”

In pure Reddit-ness there are pages and pages of comments and thoughts on RPO. The above two made me stop to think about this ersatz book report I was considering. My self awareness and self doubt made me take a long pause.

A LAN Event

A week ago a dear friend and the one who introduced me to Destiny after trying for ten years to get me to game (I should have listened) had a Destiny LAN event with friends from various corners of the US. I dropped over. This friend carried me for years in Destiny and put up with my dumbness yet was always there for me to help and hand hold. These are all good people some even friends. The banter and teasing was fun. Trying to login to my PS4 was a fracking riot since it means using the controller to spell. It was removed from my spastic slow hands so an adult could enter it correctly. Did you know if you hit the left bumper it makes caps? Yup that is how newbie I am.

I played with them for a couple of hours got some great gear and moved up in my Crucible rank. Yes I was teased but not cruelly or without cause. My K/D ratio was sucksterville but they played with me and basically backpacked me. Another “You like me you really like me.” moment. I was still half way though RPO thinking about what I am reading and doing and how it all fits together.

Game Over

The age difference between those guys in the LAN and me is easily 20 years and they aren’t kids so go figure. On the plus side they talk to me and accept me at my current age, skill, knowledge, and not-cool self. This is great and speaks to what the net and gaming can do. I know these guys and they to a person have hearts of gold and the ability to critically appraise complex ideas clearly. They can rub two brains cells together all the while making their avatars jump, shoot, run, and kill. Me walking and drinking water means I don’t have to wash my shirt tomorrow.

At the same time I feel I hold them back. That may be more, my perception is my projected reality. This is not said as the kid who never got picked for kick ball. This is, I have over reached my place and lot in life. The runway I have left combined with the attention span of gnat is not designed to make me a great video gamer. I will add my Low Frustration Tolerance is off the charts some days so imagine failing at an avatar jump, repeatedly. Cray Cray. I can get better but, never good enough for those I admire. These guys were Halo born and bred. That’s what makes them great to know and follow and screws my head up playing with them.

I am happy to do PvE (I had to ask what that meant), level up, get better weapons, and work to improve. I will never be Parzival. Leaving home is overrated as is believing there is magic in connections both in life and online. Unless you fit like a lego to other lego’s its unfair to them. People can only backpack you for so long you need to level up on your own.

This entire piece is less a criticism of me, anyone, or the world. It is more a dose of reality and to stop believing my own PR.

Abreaction is the bringing to the surface of unpleasant suppressed thoughts and feelings in such a way that their being felt, emotionally, out in the open, lessens their power or hold over a person, and sometimes can seem to extinguish them completely. Abreaction is like a reverse lightning-rod, for it can “ground” tempestuous psychic energies that exist inside a person, in order that such energies will lose their power on the outside.

As I tooled around the site which identifies itself as…”a ministry that seeks to connect the Christian faith with the realities of everyday life in fresh and down-to-earth ways”. Not dissuaded I continued to poke around with great curiosity what secrets Mockingbird may hold for me. Or at least point to a topic. I was not disappointed. They have a glossary of words. Abreaction was there. They have rich trove of articles.

A ‘reverse lighting-rod’ is a great descriptor for my thoughts on loss, mourning, and grief. The exercise of examining the grief we experience when a loved one dies is far more effective than denial as a way to manage grief. Experiences integrated into our current compendium of understanding creates new knowledge and insights.

We all share the same four chemical bases in our DNA thymine, adenine, guanine, and cytosine. They are assembled differently in each of us to create a unique human. Yet as unique as our DNA makes us we overlap with one another as a Venn diagram in varying degrees. Donna my wife died August 2011. A neighbor and friend M died this week. Where Donna and M differ and where they overlap in their diagnosis’s and death is telling about death and dying in America.

Diagnosis

Donna was diagnosed January of 2009. She had an X-Ray that showed some lesions and subsequent PET that confirmed Stage IV cancer. Donna was told she had Stage IV via voice mail at her office by her primary care physician.

In 2015 M discovered a small lump in her right breast while in England. A lumpectomy was performed and nodes were harvested. There was no distant cancers discovered in the nodes. A biopsy on the tumor show triple negative. Upon returning to the US radiation was performed and she was told she was cancer free. Four months ago M was having breathing issues with shortness of breath upon exertion. After a month of adjusting her Afib medications her cardiologist recommended she go to the emergency department of a local academic hospital. She remained in the ED for 36 hours during which she received an X-Ray of the chest determine if there was a pulmonary embolism. A PA came to her bed in the busy ED and told her you don’t have an embolism but there are lesions on your bone which is cancer. M was discharged.

Donna was much younger that M by about 16 years. Donna had no underlying medical conditions. M had Afib.

Post Diagnosis Care and Treatment

Donna had a primary care physician (PCP) for over 20 years. Dr. S was my PCP as well for about 25 years. Even though Dr. S was a bit ham fisted with the voice mail about her cancer, he got Donna in to see the head of oncology at the academic hospital he has privileges at. The oncologist Dr. B. was simply said, amazing. He was caring, smart, focused on Donna, and became her team leader. During Donna’s first visit with Dr. B. he made it very clear to Donna. “I am your primary care physician from now on. Any physician or healthcare professional you see they check with me about any care they are giving you so I can manage it with them.’ From that point on all care and treatment up to and including hospice was lead by Dr. B.

Donna had a craniotomy for small tumor and Dr. B recommended a highly skilled neurosurgeon who we liked greatly and did an amazing job. Following the craniotomy Donna had whole brain radiation. There were issues with the radiologist. He was data driven and not entirely honest regarding hair loss. Of all the team members Donna had he was the least skilled at delivering complete care for her and communicating well. I believe this was age related since he was very young. His clinical care was excellent but there is more to radiology then math.

For the next two and a half years Donna had three rounds of chemotherapy. The first round stopped progression and shrunk two of the tumors. The chemotherapy that first round cause some nausea but not much else. Nearly 10 months later the tumors were growing and a second chemotherapy was started with less side effects. And the tumors again shrunk. In all her treatment was manageable and responsive. Dr. B gave us his cell number and we could text him any time or call. He was very responsive via email as well.

M did not have a primary care physician. She had a cardiologist for an underlying issue. The cardiologist management of M ended with the cancer diagnosis. At this point the radiologist who treated M breast cancer a year and half earlier and who M respected recommended an oncologist within the hospital system. M’s daughter and I went with M to see the oncologist on the initial visit. This oncologist was not Dr. B. she was clinically skilled but the issues with communications and listening to M and her daughter were lacking. M made it clear she did not want any chemo since this was Stage IV. The oncologist already had in mind a treatment plan and presented it without consideration for M’s clearly stated goals. This oncologist also recommended a PET to determine and extent of the disease as well as a biopsy. Again the oncologist was focused on delivering what she thought was clinically best care and not what M wanted.

M had the PET. Refused an MRI to look for lesions in the brain. M also was reluctant to have the biopsy but did.

Following these tests M, her daughter, and I went to see the oncologist for her second visit. The oncologist offered an oral chemotherapeutic agent and a bisphosphonate injection. M got the injection and filled the Rx. A major quality of life issue for both M and her daughter was the shortness of breath and how M was having great difficulty walking more than a few feet. The oncologist told M that her lungs were clear and said she thought this was an issue of the cancer in some way or perhaps part of the cardiology issue. M and the daughter could not get a clear concise answer. They were both frustrated. M asked about prognosis. That was more difficult for the oncologist as it is for any physician. M and the daughter asked about the biopsy. It took 10 minutes and a two different sites for oncologist to say I don’t have the results from a week ago. Finally she found the pathology report and said it was not complete and had to be redone but it was highly likely the lesions were from the breast cancer and were diffused.

M and her daughter left frustrated and unsure of what was going on. M went home and began the oral chemo. The shortness of breath remained the major issue that remained unaddressed. Over the course of the next two weeks M was growing more tired and the breathlessness was debilitating. The daughter called the oncologist frequently regarding the breathlessness. One rather tense call that offered no help or resolution the oncologist said that M was not her only patient. Finally M went to the ED one early morning. The ED attending sent her for an MRI. A pleural effusion was identified.

It was at this point the relationship between M, her daughter, and the oncologist broke down. The oncologist was still recommending chemotherapy. M was still saying no way. When the PA noted that on the original PET that there was some fluid in pleural cavity. M’s daughter was livid that it was not noted earlier. The oncologist was defensive saying it was very little fluid. Words were exchanged.

M was admitted for a throacentesis. On the unit M came under the care of the hospitalist. A pulmonologist was brought in to perform the throacentesis. The oncologist remained a participating team member and was still talking chemotherapy. Following the throcentesis breathing returned to normal. M said to me, “This is amazing I am feeling so much better like life is worth living.”

M and her daughter while in the hospital met with the social worker and began the process of applying for home hospice. M was discharged and went home. A local company providing home hospice support.

Hospice

Once home and the breathlessness largely resolved M rested and was doing well. Ten days to two weeks post discharge the breathlessness returned and in the middle of the night an ambulance was called to admit M to the hospital. The pleural effusion had returned. M was scheduled for a second throcentesis which would be done at an other facility. Placement of a drain was recommended in order to avoid continued pleural effusions. This time the wait for the throcentesis was ten hours.

M got back to the hospital late that evening completely exhausted. For the next week M’s daughter took on the task of finding a hospice or nursing home for M. During this period M was bedridden. She had stopped eating and was awake and talkative for short periods of time before falling asleep. I saw her each day with a kale spinach pineapple mint, and apple smoothie. She remained sharp and funny. Her daughter was fighting to find a place for her mom and doing all the end-of-life paperwork. M was denied hospice because she was, as described by the hospitalist, “not actively dying”. M died a week after her second throcentesis in the hospital. Her daughter was with her and aggressively intervene to stop life saving measures being taken, M had in place a DNR.

Donna was in the hospital and had two throocentesis’s neither of which was successful. It was after the second on that Dr. B her oncologist called a meeting in Donna’s room to discuss palliative care and home hospice. As well as that meeting was orchestrated and run Donna shut down. I was contacted by the hospice group and set up home hospice. The effects of the whole brain radiation was beginning to present with Donna. Delirium was beginning as was Sundowning Syndrome. The palliative care team noted that her most recent MRI shown thinning for the cerebral cortex which is consistent with Alzheimer’s Disease.

By the time it came to bring Donna home, one week after her admissions for the throcentesis, Dr. S (our PCP), Dr. B., and the palliative care team recommended that Donna be admitted to the in patient hospice unit. They were not convinced that at home hospice was the best for Donna nor believe I could deliver the care she needed. On July 18, 2011 Donna entered the hospice where she remained until August 7 when she died. That is the median time for patient stays in hospice.

Donna deterioated over the weeks in hospice. First slowly and then more rapidly. Dr. S and Dr. B came to review her charts, not much to review, but mostly speak with me. There was absolutely no abandonment of Donna when she transferred to hospice from her primary care team. In addition to Dr’s. S & B there was the palliative care team, the social workers, clergy, and volunteers who were there for her and me. We were embraced at the the single more critical time in both our lives.

The Part of the Venn That Didn’t Overlap A Patient Advocate

M and Donna both died from cancer. The diseases were different but the clinical path for both were similar though the time frame was longer with Donna. The difference that stands out for me was the clinical team.

M did not have a primary care physician who had 20+ years of medical care. Donna did. M did not have an oncologist that was brought into to treat her by her primary care physician. M did not have the an oncology team on hand when she was home during her short treatment. Donna did. When M was hospitalized she had to rely on a hospitalist. Donna had an oncologist who had cared for her for two and a half years and a primary care physician who cared for her for 20+ years. Both were active when Donna was admitted.

Clinical care for M met the standards of care and was delivered skillfully. The weekly change of hospitalists was smooth because the charts were done daily. What M and her daughter did not have that Donna and I had was a team that advocated for Donna, communicated among themselves, and delivered the care that Donna wanted. There were the clinical advocates for Donna and me. M had a clinical team that advocated for standard of care. (That may be harsh and that is unintended on my part.)

The single most important thing you can do for your healthcare is to find a primary care physician and create a long term relationship. Over time the physician will understand the goals and desires you have for your healthcare. They will know your medical history as well as anyone can. They, hopefully, will become your advocate for you if you are seriously injured ill or facing difficult life decisions. The primary care physician is your single most important advocate.

I found the Mail to Self app a year and a half ago. It is genius in its simplicity and productivity. At the same time maniacal in the burden of its output. Where I mail a ton of articles to read later, which pile up. Here is the recent few to share in my personal News Feed.

“Try not to hide your grief,” you said. “If you talk about it, you will discover so many other women who have been through what you have been through and talking about it honours the sadness and helps everyone.”

I couldn’t agree more, honor the sadness and find a way to help others.

Grief Has Many Steps

This is a two part series published in Umpqua Post out of OR. Part 1Part 2

Part One discusses the stages of grief less from the Kubler Ross Five Stages and more from the idea grief is not on a schedule and it is unique to all of us.

“They state that normal grief usually only lasts six months or less. A prolonged grief reaction lasts longer than six months and includes intrusive thoughts related to the loss of the person, intense feeling of emotional pain, or yearning for the lost person.”

Part Two takes a look at who is at risk for having a difficult time with the loss of a loved one.

“If a person was highly dependent on the relationship with the person who is gone, dealing with the loss will often be much harder. Those who have poor social support or history of abuse or neglect themselves will often have prolonged or abnormal grief reactions. And one of the most difficult losses to deal with is the loss of a child.”

The article ends with this, which fits with my writings, podcasts, and book.

“All sorrows can be borne if you put them in a story or tell a story about them,” said the writer Isak Dinesen.

An interview with Rachel Ward a podcast producer with Gimlet. Her husband died unexpectedly at age 35. Rachel was 32.

Sudden death vs. a prolonged terminal diagnosis is different but the grief feels the same.

“Um. I actually feel moderately okay in my grief. Like I feel like I understand like some of the dynamics of like when in the year I’m going to feel a little less capable or more capable. Among people that I already know I feel pretty comfortable bringing him into a conversation and being like, “Ah, Steve used to say this really funny thing.” So in relation to my own grief like I think I’m going to give myself a 6 out of 10. The thing I worry about is being like stuck a little bit.”

I’ve written about the the inherent reflective nature of my loss and grief and how memories of Donna and our life would come in fits and starts. These moments become fulcrums to move my life forward and advance my self knowledge, us (Donna & I), and living in this world. This simple idea of ‘I remember this‘ becomes more complex when examined from what is not remembered. We don’t know what we don’t know. Like wise you don’t remember what you don’t remember.

Donna did not dwell on her illness. She did openly fear her eminent death. She gave me her illness to manage. Any thoughts of death any fear of death were held tightly in her heart. Donna wanted to remain alive and to live as she always had, on her terms. The interruptions of doctor visits, treatments, side effects, and pain was when she stoped to recognize the disease. As quickly as that happened it disappeared into my hands. My area of expertise/skill was managing the day to day disease. Getting her, nah going with her, to all appointments. Making pill packs at home.

I’ve attributed this division of labor to Donna’s desire to be disease free, it was not about denial as much as it was about division of labor. As a couple, I suspect like most couples, we’ve always had a division of labor. I would do the cooking. Donna would buy the kitchen items, dishes, pots, pans, etc. since they had to fit with the design of our home her visual eye. I would be the one to change the sheets. Donna selected the sheets and cases.

Transactive Memory

It turns out that this is Transative Memory. Transactive Memory is the fact people in continuing relationships (in organizations as well) become specialized in different functions of labor within the relationship. Part of that specialization is the ability or skill set where the various members of the relationship manages different knowledge domains. One parter may remember all the details of what is needed to manage specific a area, Donna knew what sheets, shams, duvets, etc that went with what for each season. While I would be the one to change the sheets in a heartbeat. This is Transactive Memory. We used each others memories as our own. I didn’t not need to know color or style. Donna didn’t need to know how to make clarified butter or a hospital corner.

Transactive Memory in romantic relations improves self-esteem, life satisfaction, and happiness. Add to these benefits emotional support, companionship, and security. (Donna and I felt so very secure around each other and with each other.) It is postulated that romantic partners pool cognitive resources to increase our collective memories/information with less work. This pool of cognitive resources created a rich network of memories for us and after her death for me.

“Additionally, because people know about each other’s expertise (and non-expertise) they can make judgments about the reliability and value of any information conveyed. It is easy to see how a shared transactive memory system might work to help couples navigate their daily lives with ease and efficiency.”

The interesting part about Transactive Memory is that the theory and research shows that it is about the transaction or communications between members or a couple to encode, store, and retrieve information. Donna could give me a look and I knew what needed to be done. Or I could look perplexed and she would jump in. At the center of this theory is cognitive interdependence where the individuals depend on the knowledge of others and the outcomes are dependent on their knowledge. I learned to cook as a child. Donna was not a cook. So cooking became my knowledge area.

“…recruited couples who had been together for at least 3 months, and found that they used each other as extensions of their own memories, outperforming pairs of strangers at remembering category exemplars in different areas of expertise (for example science, food, spelling).”

Remembering What You Don’t Remember

Those memories (skills) Donna had died with her. Though they were effectively removed from my heart they were not lost as much as witnesses to deficits in my life now. Twice a year when I am faced with changing the shames and duvet I remember what I didn’t remember, Donna did this. This loss is not the same as loss and grief of Donna but the reality that we played well together and made each other better. I grieve for that balance between us where we as Donna and Mark would create new and better and do faster and more effectively.

I found the Mail to Self app a year and a half ago. It is genius in its simplicity and productivity. At the same time maniacal in the burden of its output.

The app is added to your phone. You enter an email address into the app. After that when you swipe up or go to share a web page, article, etc. there is a button for Mail to Self. Just tap it and whoosh you got the article URL etc. in your inbox. The workflow is this. I will keep looking at my news feed, my papers, my sites, etc. and just mail to self to read later. Not so fast. My inbox is filled and I am not reading later cuz I got the attention span of a gnat

To repair the gnat in me I am going to post twice a week some of the articles I mailed to self. This is a way to share them with my non/imaginary readers and to force me to achieve inbox zero.

Beryl Schewe writing in the Eden Prairie News offers a unique way to address a loved ones grief when words fail us.

If only grief were so easy. Long after your flower arrangement has composted, grief lingers on. Grief has a way of showing up like an uninvited houseguest who refuses to leave.

Schewes’ idea is to send a book. She offers a selection of five books one of which includes C.S. Lewis’ “A Grief Observed” which is my favorite read that I have returned to frequently. Hop over and take a look.

This is a stunning and powerful TED talk by Lucy Kalanithi a physician whose husband was diagnosed with Stage IV Lung Cancer and died 22 months later.

Much of what she says and addresses are very close if not similar to what I felt and what Donna did with her life after her diagnosis till her death. Donna and her husband Paul may not be identical but the one point Lucy made that rings true for both Donna and I is this:

“Our job isn’t to fight fate, but to help each other through. Not as soldiers but as shepherds.”

I was the caregiver and her shepherd. She became my muse and a shadow for the remainder of my life.

There’s a poem by W.S. Merwin — it’s just two sentences long — that captures how I feel now. “Your absence has gone through me like thread through a needle. Everything I do is stitched with its color.”

I found the Mail to Self app a year and a half ago. It is genius in its simplicity and productivity. At the same time maniacal in the burden of its output. It is a ersatz news feed for me.

The app is added to your phone. You enter an email address into the app. After that when you swipe up or go to share a web page, article, etc. there is a button for Mail to Self. Just tap it and whoosh you got the article URL etc. in your inbox. The workflow is this. I will keep looking at my news feed, my papers, my sites, etc. and just mail to self to read later. Not so fast. My inbox is filled and I am not reading later cuz I got the attention span of a gnat

To repair the gnat in me I am going to post twice a week some of the articles I mailed to self. This is a way to share them with my non/imaginary readers and to force me to achieve inbox zero.

This is from the April 29, 2017 Economist and perhaps one of the best articulated and presented cases for end-of-life care.

Most important, these medicalised deaths do not seem to be what people want. Polls, including one carried out in four large countries by the Kaiser Family Foundation, an American think-tank, and The Economist, find that most people in good health hope that, when the time comes, they will die at home. And few, when asked about their hopes for their final days, say that their priority is to live as long as possible. Rather, they want to die free from pain, at peace, and surrounded by loved ones for whom they are not a burden.

This is counter to what I’ve read and seen. Many patients receive hospitalized treatment that saps quality of life and renders the final days unbearable. All of this because family and friends want medicine to do everything possible to extend life where extending life is destroying life. And this is without consideration of what the loved one wants.

The Economist notes that death in the hospital means greater pain, stress, and depression for loved ones. While compared to similar patients in hospice. Death in the hospital leads to family strife and prolonged grief.

Donna was placed in hospice. She died in hospice. Her care there was loving and kind. My care from the hospice staff and her oncologist was supportive and focused on my long-term outcome. As I’ve said ‘Hospice saved my life.’

There is much to consider and learn in this short editorial. It ends with this:

But honest and open conversations with the dying should be as much a part of modern medicine as prescribing drugs or fixing broken bones. A better death means a better life, right until the end.

Rum is a new stop in the sophistication of my liquor taste buds. Typical of the times and what was trending there was beer and vodka. Of course wine but truth be told I know when I have a good wine but since they are mostly French, Italian, or Spanish remembering the names escaped me.

A few years back Ward III joined our block. The bar is one of the finest cocktail bars in NYC and the owners are amazing people who over time became friends. As with friends you share and discover what they like. One of the bartenders at Ward III introduced me to Rum. Not Rum and coke but, sipping Rum served neat. Just like Rye whisky or Bourbon. I saw this review and thought I would share it with you all.

You’ll probably always feel sad when you think of Tim. And, really, would you want it any other way? Your grief is also your link to the love that you feel for him. I think a better approach than trying to “get over” these feelings would be to respect their essential dignity. Treat your grief with respect, not as a weakness from which you should “recover.”

This is from The Guardian and again points to the understanding that grief is not loss but opening yourself to life.

And yet, says Julia, running away from it means we will never recover from it. Embracing it, moving through its agony, and allowing ourselves to just be while it washes over us, is the only way to survive it; because we have to feel the worst of it in order to let it change us, and then we can start to find out who we are going to be in the wake of it.

I found the Mail to Self app a year and a half ago. It is genius in its simplicity and productivity. At the same time maniacal in the burden of its output. It is my mini me news feed.

The app is added to your phone. You enter an email address into the app. After that when you swipe up or go to share a web page, article, etc. there is a button for Mail to Self. Just tap it and whoosh you got the article URL etc. in your inbox. The workflow is this. I will keep looking at my news feed, my papers, my sites, etc. and just mail to self to read later. Not so fast. My inbox is filled and I am not reading later cuz I got the attention span of a gnat

To repair the gnat in me I am going to post twice a week some of the articles I mailed to self. This is a way to share them with my non/imaginary readers and to force me to achieve inbox zero.

Angela Chen writing for the The Paris Review examines the ‘the words that bookend a life.’ Specifically she examines the West’s concept of famous last words and East where premeditated death poems (jisei) are a long tradition.

Chen points that from the start the last words of Jesus on the cross opened the entire exercise where during the Enlightenment one and all were excepted to offer up brilliance and insight minutes prior to dying.

This was in direct counter point to the Japanese. Elderly samurai and those in the upper class were spurred to compose death poem that would be shared for criticism and input. If you ask about the fear of sudden death in the Japan.

“…Narushima Chuhachiro, who started drafting death poems at fifty lest he die unprepared. Chuhachiro sent this one to his poetry teacher: “For eighty years and more, by the grace of my sovereign / and my parents, I have lived / with a tranquil heart / between the flowers and the moon.” The teacher’s response: “When you reach age ninety, correct the first line.”

Donna was in hospice for her last 18 days. I would be there daily and at night. One of the attending on the staff said that to be present at the time of death is rare. I wanted to be there less for this last words but so she would not be alone. I was home walking the dog and got a call to hurry back. The cab driver went the wrong way and I was not there for her last words or otherwise. Here is a podcast about Hospice and Beyond.

As I read Chen’s article and consider last words vs. death poems I lean toward the poem. I see my blog as my death poems albeit long form. Though I would think of it in terms of a meandering suicide note.

Parting Shots is a short article but one we may all want to consider. Either rehearse our closing act or start thinking about how we want to be remembered. I am guessing that what is left on the Internet is what will be remembered. So save wisely.

Emily Esfahani Smith writing in the The Atlantic from her book The Power of Meaning reviews the work of psychiatrist William Breitbart chairman of the Department of Psychiatry and Behavioral Sciences at Memorial Sloan Kettering. The question on top of mind when given a diagnosis of terminal illness is less about when I will die or how much pain, it is about what makes life meaningful? “Meaning that cannot be destroyed by death.”

Esfahani Smith presents recent data addressing that meaningful lives are demonstrated because of three factors, my existence is valued by others, I am driven by a sense of purpose or important life goals, and I see my path to this point as coherent and integrated. Though as I review my writings there is a struggle to find meaning and purpose.

“Psychologists and philosophers say that the path to meaning lies in connecting and contributing to something that is bigger than the self, like family, country, or God.”

Breitbart wanted to help patients build meaning and reduce suicidal ideation. His work was to create and eight session group therapy program of six to eight cancer patients. Each session was structured around set questions that the group were asked. In the first session participants were asked about moments or experiences that were meaningful. In the second session patients responded to who am I. In the final session they were asked to what part of them would going on living after death.

Breitbart went on to perform three randomized, controlled experiments on meaning centered psychotherapy. His results found this work was transformative, patients attitudes toward life and death changed with less hopelessness and anxious about death. Spiritual wellbeing improved.

Breitbart comments that the time between diagnosis and death is an opportunity for “extraordinary growth”.

Two observations from my world. After Donna died the entire world I lived in lost most of its meaning and purpose. Most of that loss is directly related to Donna but a lot of is to do with my failure to find work or find what I wanted. I live with the sense this is the end I have had all the meaning and purpose in my life. My friend Scott writes about this top at Age Spots Blog so hop over and take a look. Right now I vacillate between oh fuck to there is something here to find and uncover.

My second thought is that Breitbart is right, there is extraordinary growth between dx and death particularly when you are a caregiver for someone dying. And that growth extends well beyond the death though the experience of grief and the role it plays in knowledge acquisition and understanding of ones emotions and life.

This article is well outside my usual link and opinion. This was from a The Tribune India which is one I do not normally or ever read. Second the opinion here is 180 degrees opposite of my thoughts on closure.

Closure is indifference. It is denial said pretty. I subscribe that grief and loss can be a window into our loved ones, ourselves, and the world at large. This is from a Poem Unconditional by Jennifer Welwood and captures my thoughts on closure.

Unconditional

Willing to experience aloneness,

I discover connection everywhere;

Turning to face my fear,

I meet the warrior who lives within;

Opening to my loss,

I gain the embrace of the universe;

Surrendering into emptiness,

I find fullness without end.

Get Vaid writing in the The Tribune captures a societal view of grief that I had not considered.

“Oh, she is fine. She is moving on in life already,” the thinly veiled ‘judgment’ pierced through my ears as I heard someone at work talk about a friend’s widow handling her recent bereavement.”

We all grieve differently. Those of us who grieve know full well the reality of our grief and the importance to not judge others grief. Vaid is addressing the inverse of what I have witnessed the well meaning friends or family members who say it is time to move on. Date someone as if dating is a cure for loss. This article and discussion is about how people set standards for grief and expect you to live up to it, their standards.

The bigger issue here is that we must allow those to are grieving to do so at their pace and way. Only if the grieving becomes pathological and complicated then should we help them find support.